Wednesday, June 29, 2005

Owie, boo-boo belly!

Next time I’ll have someone drive me, just in case things go a little bit south like they did yesterday.  I was given 250 mg of IV hydrocortisone before the Remicade, in hopes of avoiding the serum-sickness reaction, and it gave me an unbelievable stomach ache.  First it was just a little heartburn but it grew into a burning from my throat all the way down, and pains in my intestines (not in the usual place where the Crohn’s is, but all through them) that remain even today.

The nurse gave me some Mylanta, which helped for about a minute.  I went into the rest room at one point, and ended up getting really dizzy… so I put myself down on the floor before I fell down.  I broke out in a sweat and when I came out Susan (the nurse) said I was very pale.  I didn’t take any Benadryl in the morning, because I had to drive, so the itching got pretty bad too.  My hands were the worst, and my palms were beet red.  Ultimately Dr. C asked them to give me 25 mg of Benadryl, and to keep me there for a couple hours after the infusion ended.  I took it, and promptly passed out, rocking back and forth on my side because my stomach hurt so bad.  Once I came to, I walked around a little bit to wake up and then got the hell out of there as quickly as I could.  Driving on the 405 freeway at 4:00 in the afternoon is no picnic, and I wanted to get home so I could ail in peace in my own house, in my comfy clothes that don’t squeeze my belly.

Even though I’ve still got gut pains from hell, I’ll go in to work today.  It’s my turn to take the pager, and I feel bad that my colleagues have been having to take on my work so often lately.  Intellectually, I know it’s not my fault that I’m sick and that medical leave exists so that people like me can have time to take care of themselves without worrying that they’ll be out of a job just because they’re ill; but I place so much value on my ability to do my job (or perhaps it’s just that going to work is how I get the paycheck that allows me to take care of my family) that it’s really difficult for me to admit when I’m not up to the task.  I hate letting people down, and I REALLY hate it when my body betrays me and I get so sick that it’s just impossible to even fake my way through the work I have to do.

Today I’ll do my best to work through the pain, and just hope that it goes away soon.  Maybe I’ll be lucky and it’ll end up being just some huge fart that needs to make its way out.  Man, y’know you’re getting old when a fart’s something to look forward to!

Tuesday, June 28, 2005

Another Remicade Treatment Today

I’m still itching everywhere, and yesterday at lunchtime my upper lip went monkey on me, in front of the very eyes of two of my work buds; but I’ll be getting another Remicade infusion today.  I guess they’ll precede it with some cortisone, which is supposed to minimize the serum-sickness-type reaction.  We’ll see whether I conform to the norm, I suppose!

Chances are I’ll nod out through the whole process… I’ve been up since 4:30 AM itching my ever-lovin’ ass off.  I’d take another Benadryl, but I have to drive to and from the Hematology lab and I’d rather not be high on the 405!

Thursday, June 23, 2005

Thy Name is Serum-Sickness

Apparently my symptoms are pretty much textbook examples of “serum-sickness-like reactions...” Dr. C gave it a name, whew!

I’m sure I read these Remicade (Infliximab) warnings (I always DO no matter what meds I’m given), but it’s probable I let the data slip off because I figured “that’ll never happen.” Ha!  Joke’s on me!

==
Hypersensitivity

REMICADE has been associated with hypersensitivity reactions that vary in their time of onset and required hospitalization in some cases. Most hypersensitivity reactions, which include urticaria, dyspnea, and/or hypotension, have occurred during or within 2 hours of REMICADE infusion. However, in some cases, serum sickness-like reactions have been observed in Crohn’s disease patients 3 to 12 days after REMICADE therapy was reinstituted following an extended period without REMICADE treatment.

Symptoms associated with these reactions include fever, rash, headache, sore throat, myalgias, polyarthralgias, hand and facial edema, and/or dysphagia. These reactions were associated with marked increase in antibodies to infliximab, loss of detectable serum concentrations of infliximab, and possible loss of drug efficacy. REMICADE should be discontinued for severe reactions. Medications for the treatment of hypersensitivity reactions (e.g., acetaminophen, antihistamines, corticosteroids, and/or epinephrine) should be available for immediate use in the event of a reaction (see ADVERSE REACTIONS, Infusion-related Reactions).
==

Doh!

Now that I know though, and since I’m seeing the hematologist this morning, I’ll be sure to ask him to take any tests he might deem appropriate, considering there’s a possibility of Hematologic events as well.

Jesus Christ, it’s like a full-time job just trying to be normal and healthy.

Wednesday, June 22, 2005

Day Two of the Reaction

After spending most of yesterday passed out from the Benadryl, and taking 60mg of Prednisone, the hives have somewhat subsided, though I’m still pretty goddamned itchy all over.  My lips and hands aren’t as swollen either, but my joints ache and I’ve got a pretty awful headache.  So far I haven’t taken any Benadryl this morning, but I think I will, just to stop the itching.  Today I’ll take only 25mg though, in hopes that it won’t knock me out completely.  I have to call Dr. C again today to advise him of the progress thusfar, and I’m hoping that he’ll recognize the joint pains and headache as the due course of the reaction subsiding.

I’ll be calling the Hematology lab to schedule the next Remicade infusion on the 28th of this month.  I guess if it’s the Remicade that caused this horrible reaction, I’ll know for sure a week or so after the infusion.  It’d be just my luck that the one treatment that holds promise for stopping this Crohn’s flare-up and keeping me from having to go on a long course of Prednisone and ultimately end up having to have another bowel resection, causes these hives and other problems.  Given the choice though, I’ll take the bouts of hives over steroids and surgery.

Tuesday, June 21, 2005

Arrrrgh, I’m On Fire!

It’s 6:00 in the morning, and I’m waiting for the doctor on call to call me back.  I finally gave in and called Dr. C’s office because my whole body seems to be covered in hives.  I had a few itchy spots when I went to bed around midnight, and my lips felt a little tingly.  I woke up around 2:00 AM and was itchy in a few more spots, with a red bump here & there.  I thought maybe I’d gotten bitten by a bug or something, so I scratched a little bit and did my best to go back to sleep.  3 hours later I was up again, and my upper lip is now swollen, the bottom one’s not far behind, and I’ve got hives all over my arms, legs, neck, ears, scalp, ass - everywhere!  I also feel like I’ve got something stuck at the bottom of my esophagus (or like I’m having reflux), and my hands seem to be swollen too.

Yesterday morning when I woke up I had what I thought was a sinus headache, with itchy ears & throat.  I took a Sudafed^™ Sinus Headache pill, which made the headache go away, but not the itchy ears & throat.  I also took an Advil Allergy pill around 4:00 PM, which didn’t seem to do much of anything.

These hives and shit might be a side-effect of the Remicade, but I’ve had something similar happen when I’d had no medicine at all.  Twice when I was in my 20s I just woke up one day with either my upper or bottom lip swollen to about 5 times its normal size; and when I was 11, I broke out in hives that disappeared by the time I got into the doctor’s office, but that he thought might have been a reaction to the bronchitis/pneumonia he said I had.  That bout of hives came up the day after a night that my guardians at the time decided they were not going to give me any cough medicine before bed; I guess they thought I was faking the 2 week-old phlegmatic deep chest cough just to get high on NyQuil or something.  Asshats.

I’m having a wild fantasy right now… of grabbing the fucking cheese grater and scratching myself until I bleed.  There’s not a place on my body right now that doesn’t itch whenever I touch it.  Even typing makes my fingers and hands itch, because they feel swollen (well, they ARE swollen - I had to work pretty hard to get my rings off a while ago) and tingly.

Ugh, the answering service just called back and they’re still trying to reach the doctor on call.  I just told them I need someone, ANYONE to call me in a prescription of Benadryl… the pharmacy opens in 35 minutes, and if I can keep from scratching my skin off between now and when I can pop a pill, maybe I can get some relief.  GAWD THIS SUCKS!!!!

Update: Dr. C’s not sure whether the reaction is from the Remicade or not, but in the meantime he’s advised I take 50 mg of Benedryl, and he’s calling me in a short course of Prednisone (Jesus, I really DIDN’T want to ever hear that name again!).  I just took the Benadryl and Rob will pick up the Prednisone on his way home for lunch.  Hopefully the Bennies will kick in soon and either stop the itching or knock my ass out so I don’t feel it.  Meanwhile I’m taking my so-itchy-I-want-to-scream, UNhappy ass and my Angelina Jolie lips directly to the couch and hoping for quick and blissful unconsciousness…